To be pissed at my doctors and complain

I feel your pain OP. I know my symptoms and left untreated while I wait for cultures the infection has often tracked to my kidneys, causing longer time off work and more pain. Kidney scans are clear. Sometimes lab tests show infection, sometimes not.

I last went to my GP with 3 specific requests:
For a Urology referral to understand the cause rather than the symptoms. (Agreed but i have been waiting since April)
For topical oestrogen to see if it reduces incidents (disagreed, apparently at 43 I'm too young and she wanted me to wait and see what Urology say..I'll fight that battle next time)
And in the meantime for a prescription I can keep at home and use as soon as my symptoms start. (Agreed and has renewed this twice. Not ideal but neither is lying awake on a Saturday night knowing you have to navigate out of hours the next day, or being on holiday and symptoms starting.)

It feels like a battle sometimes...

I was this child in the 80s and it’s been life impacting. I feel for you and your son.

Look up interstitial cystitis, i have this condition and it's basically non bacterial cystitis.

Actually I doubt the OP is imagining anything. Rather than having 5x infections a year, it’s likely to be one chronic infection which has never fully gone away due to under treatment via too short courses of abx. What she needs is a long course of ideally high dose abx. However this is off guidelines and the only place I know of on the nhs which will prescribe such a dose is the LUTS clinic in London.

you can ask to be referred to the LUTS clinic but I have a suspicion now that they only accept referrals from a urologist not a GP. When I got referred years ago it was much easier. In the mean time you can ask your GP for a prophylactic long term low dose course of abx such as trimethoprim.

ultimately if you have symptoms of a UTI then you have a uti. That’s what the late great Prof Malone Lee said to me and he was the foremost expert in the country on the subject. It’s well known that dip sticks and lab tests will miss something like 70% of UTIs. The best way to diagnose is looking through a microscope at a fresh sample but the nhs don’t do this. I was told for years I didn’t have a uti and as soon as Prof Malone Lee looked at my urine sample through a microscope he said it was clear I did. Oh and interstitial cystitis = medical gaslighting. Fobbing women off with a meaningless diagnosis. Which isn’t an actual diagnosis, just a name for symptoms which they still haven’t figured out the cause for because they can’t be arsed.

Actually, it’s standard practice for recurrent infections due to the risk of not treating causing severe infection. The antibiotic should be the one indicated by the previous cultures (often the same bacteria) and a referral should be done to investigate why they are recurring. In children, they would then have prophylaxis antibiotics (low dose daily) for several year to prevent serious, life threatening damage to the urinary system. I don’t know the procedure follow this for adults, but I’d assume it depends on the cause and the damage done by recurrent infections already.

Its not the reason for the antibiotics crisis.

My son had recurrent urine and kidney infections and nearly died due to diagnosis of the cause of the infections being put off and slow antibiotic prescriptions. The slow prescriptions meant further damage and hospital admissions. He now has a permanently damaged bladder and kidneys and is on a low salt/sugar diet. The OP is right to push for early antibiotics and for referral.

I hear what you’re saying in the above response - but ‘And yet OP can hold down a job with all that untreated discomfort.’ didn’t convey any of that sentiment. I personally can relate to ricocheting from one infection to another over months and then years while trying to hold down a job at the same time.

And sadly, lack of referrals and then referrals that don’t go anywhere and referrals where you get substandard help when it finally does go through does not surprise me whatsoever. This is an issue that primarily affects females, and has guidance years out of date, and even when new research findings are published, doctors often don’t know about it. That’s if you can even see a doctor. It’s an endless miserable battle.

To further complicate matters, women often start off with recurrent bacterial infections that go over years, often resistant to different types of antibiotics. Then they get scarring, and then, after that perimenopause kicks in which brings along similar symptoms for different reasons. It’s a lifelong misery.

@lljkk so you're suggestion is that the OP is making this up and a bit stupid and forgets appointments.

Yeh it's 100% all in her head for sure. Medical gaslighting is alive and well.

I'm not saying OP is a fantasist, I'm wondering if she suspects infection when it isn't there, which is why the 5x/year antiBs aren't effective and the 9/10 dipsticks come back negative. OP's anxiety about infection risk must be high, and she may fearfully be locked into thinking she must get x treatment.

Interstitial Cystitis was an example given of a condition that gives similar symptoms but antiBs (I imagine) don't fix IC. Most mild infections will clear by selves anyway, even if horrible experience in meantime, so after 2 weeks the antiBs might seem to have fixed 'it' but actually 'it' was already clearing up, and that's because mild infections self-clear and maybe 'it' was never an infection at all.

I can understand raising Merry Hell over 2 lost referrals, but again... that seems bizarre. Is GP lying when they tell OP she had a referral? Does OP ignore letters inviting her to appointments? Does OP's referral get rejected? Is OP mistaken and she never got referrals at all?

I don't know OP but I do know people get confused and forget information or don't act on information they were given or simply can't absorb all the information in stupidly long health letters (all especially easy to do when ill) and leave out important details in their story, too.

I have vivid memory of friend's mum, diagnosed with life-limiting illness, insisting to her family she had never had this letter or that letter or this treatment offer or things explained to her. Her family complained loudly to NHS. After she died, her family went thru the mum's paperwork & found loads of letters offering treatment, appointments, etc. The mum had been offered and explained to, but she was ill & masking & confused. Never under-estimate how confusing life is when chronically ill.

NICE guidelines here https://www.nice.org.uk/guidance/ng109
GPs should usually be following these.

I had symptoms and no infection after a year of consistent infections. My bladder was just badly scarred. I had to change my diet. Drink loads of water and take cystitis sachets to relieve the symptoms for 6 months whilst the scarring went.

What's not clear is if every time the GP correctly sends a sample to lab for testing, is there proven bacterial growth?
If there isn't then sorry OP but this is not a urinary tract infection and no you shouldn't be having antibiotics.
Your GP is practicing good antibiotic stewardship

Not in this case, it’s actually pretty well known at this point that urinary bacterial infections often do not show up on initial dip tests.

It’s actually disgusting to me how OP is being pulled apart in this case. She’s mentioned the word inflammation, but I expect it’s likely that she’s referring to embedded bacteria in the wall of the bladder. Honestly, I don’t know where people get off with responding to threads like this in this way. It’s one of the most painful chronic conditions and it’s horrific when you can’t get help for it. When you know what’s wrong with you and what is needed to resolve it and yet you get ‘test is clear’ as if the problem is solved and you haven’t been glibly left basically feeling like you’re on fire.

Definitely write an email to the practice manager and ask what can be done.

OP- you sound like me!
I was eventually diagnosed with Interstitial Cystitis, so my immune system wrongly attacks my bladder and gives all the signs of a UTI- leukocytes, protein in pee, pain, frequency etc, but no actual bacteria.

There are things they can do to help this. Please ask to be referred. It was only after a locum doctor looked on my record and saw I’d been given 20 lots of antibiotics over the years, despite there being no bacteria present that I was sent to a specialist!

Unhelpful. She’s in pain, chronically, with a common condition. And you’re nitpicking and being sarcastic (as usual). This is hardly a troll situation FFS. I imagine it feels endless to the OP.

Essentially own GP won't prescribe the abx until infection actually confirmed, asked for and got abx from out of hours GP who also explained it's likely a non-infective cause. Both doctors effectively agree but one has prescribed 'as a precaution' which is why we have the abx crisis we have.

Sorry also meant to add, you can buy antibiotics online now, so take a note of the name and save yourself the GP drama.

OP have you looked up or been told about IC, it's interstitial cystitis and sounds exactly like you describe. Does your bladder feel kind of itchy and swollen? Almost like someone put knives in it?

I also have tracking kidney pain but that's due to a valve that goes into my bladder that's narrow and the valves sometimes flips the wrong way. Only ever on the one side, but a very familiar feeling.

You really need an internal camera, scan check the health of your bladder, check valves and physical and visual checks. Can you get this privately find a local urologist. The NHS are shit with this condition as it's deemed chronic, it's also not even remotely painful, I was surprised it ached a bit but I travelled home from London immediately after.

The antibiotics I will guess are not the best cure.

You may need to read about diet and trigger foods, for me tomatoes flare massive, peppers and red wine. I found this out via an elimination diet and now get maybe 1-2 flares a year. I believe it's the nightshade family.

Take anti inflammatory when it goes, that helps.

I take daily anti histamines also helps massively.

I also make sure to double void, I think that's what it's called, when I wee I sit after I've finished and kind of push more out, always for me there is a bit more my brain to bladder connection is much better for this as I suspect my whole life I've never fully emptied my bladder.

If it's bad constantly then amitriptyline would be prescribed it dulls the nerve endings, it's an old antidepressant but being used for bladder and nerve pain, for me it worked but made me so so sleepy I came off it. Loved the sleep fur a while though.

I hope some part of this helps. I'm now 48 and about to start using the vaginal oestrogen as well as my HRT to keep my bladder healthy and on track.

Ah, I thought OP was saying she never gets any treatment for 9/10 of these tests, but rather what she means is that the infection gets confirmed subsequently, every single time, after all, by culture method?

And that takes an extra week or so, doesn't it, for the culture to grow, and for the antiBs to be issued. And then 1-2 weeks on antiBs each time. But by then the OP must have lived with the symptoms for 1-2 weeks typically. So that's 5x3 = 15 weeks a year dealing with the infections.

They must get info back about which bacteria it is. I wonder if it's an antibiotic-resistant super bug.

We have to contact our GP via an online portal and I’m sure they read the first sentence and totally ignore the rest of your enquiry.

She said 4-5 times a year but it looks like it's been happening over a number of years.

A bladder infection is a urinary tract infections. UTIs are an infection of anywhere in the urinary tract from the kidneys down. Are you confusing matters. by saying you have pain that's definitely not a UTI when it is?

Hope the referral goes well and it gets investigated/ treated.

"About 9 times out of 10 my dip stick result comes back as no infection, will send to lab"

I am wondering how many times/year OP gets tested but doesn't have an infection, then. 40-50 tests a year? I've never had a test in my life.

And yet OP can hold down a job with all that untreated discomfort.

I am prone to bladder infections, specifically upper bladder, not urinary tract infections.

Are there some typos in this? It really doesn’t make any sense as it stands. What is it that you think you have?